Finally Writing About the Pandemic

covid19999

(image from istockphoto.com of some round blue shapes with blue protuberances floating on a blue background.)

 

 

And so this is a pandemic.

Before it actually happened, when people talked about quarantining in your home, I honestly thought that it would mean a week or two, three at the very most, of hanging out with my mom and watching movies and taking walks. I never imagined that schools would be canceled for the rest of the year, or the church would be closed. I never imagined the library wouldn’t be there as a resource, or that I would be rationing the last lot I took out like a slowly dwindling supply of a precious commodity.

I never imagined it, but it has been many weeks now and much to my surprise, I am doing it. I am doing it, and keeping on with the doing.

And it is hard – I am not denying that it is hard. But it is also familiar in its hardness. My entire life has changed, yes, but it has also not changed. I am still doing difficult things, I am just doing difficult things in a different way. Shopping and cooking and leisure time and schedules and meetings, everything is different, and everything is hard. But what surprises me about the pandemic is learning that for so many people, the intricacy and adversity that we face in our lives is new. Because it is not new for me, and it is not new, I would guess, for the majority of disabled people.

In a world which at the best of times gives few natural advantages to people with disabilities, it is at this worst of times that I am coming to realize an advantage to everything that I’ve been cultivating, unconsciously, since birth.

The difficulties that we face now are not things that I find any easier to deal with than a nondisabled person. What they are is more familiar. They are problems they faced before, and so I know that I can get over them.

Things like not being able to go to the places you want, or do the stuff you want to do.

Not seeing family for the sake of preserving your health, or because the environment where a gathering is being held is inaccessible to you.

Not finding what you need at the grocery store.

Being confined, by expectations and by other people and by physical barriers, and asked to do things that seem impossible. How are you expected to dig a hole with a plastic spoon, when everybody else has a shovel?

Being unable to explain to kids what is going on. Seeing other people view you with suspicion, or stare at you in public. (Now those who cough in public understand what those with physical disabilities face every single time they venture out in public.)

Being asked to create entirely new ways of existing every day, all while dealing with bodies and minds – both your own and others – that just want to hunker down and sleep.

Finding it hard to get ahold of medical professionals, spending hours on hold, being told that what you want is unreasonable and unrealistic.

Spending way too much time on electronics and not enough time doing other stuff.

Even the experience of watching people we love get very sick and die because the entire system of US health care is so damn fucked up – of fighting for your own life and knowing that your survival was beyond your own ability and you needed help that you just couldn’t get – of throwing whatever the hell you can at any given situation and hoping, hoping, hoping that maybe just maybe something will work –

Well. We’ve been there, is all.

And believe it or not, we are still there, only now we’ve added the virus stress and so you’re all down here in this hole with us and HEY.

It really, really, really fucking sucks, doesn’t it?

It really does.

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You probably expected something inspiring, hey? I got nothing. Only I think it’s funny that some people totally expect disabled people and will you to be wise sages right now and most everyone is just like, heeeeey how much chocolate can I eat before I have to consider the effect the caffeine has on my meds.

Life is hard. Life will continue to be hard. I will continue to use the skills that I’ve developed to deal with my disabilities over the years to deal with, well, let’s call them “the new and interesting ways” that some of my disabilities are currently manifesting. I will continue going to therapy and doctors appointments (by phone and video), talking to my friends (by text and video chat), exercising when I can (by myself, alone, outside, wearing a mask) and trying desperately to find things to replace the gigantic holes left in my heart by this social distancing thing. My state will likely be one of the last to reopen, as we are still accelerating in our number of cases, and our rules are getting more strict, not less. But as in all things in my life, I keep on keeping on. It is all I have ever done. It is all that I ever can do.

In Which Penguins Are Still Birds Even Though They Cannot Fly

black and white photo of penguin

(image of a black and white penguin from fairly close up, I’ve no idea what kind, looking to the right.)

The Christmas that I was seven, my grandmother gave me underwear and I cried.

She was a practical person; she had asked my mother what I needed, then gone out and bought it. The problem arose when I opened the gift in front of 25 or so varied relatives and was thus exposed as, horror of horrors, the most embarrassing thing in the world, a person who wore underwear. My reaction was overblown of course; the majority of people in the world wear underwear, and there was no reason for me to be ashamed over a gift that I had had no part in choosing. Yet I was humiliated, because a part of me had not actualized the body positivity that my parents taught, and I felt that some parts of my body were shameful and should not be acknowledged, nor should anything to do with these private parts be acknowledged. Thus, the shame. Thus, the tears and the running away.

               Many years later, in October 2019, I received a gift that was as practical, yet as unwanted and embarrassing as that long-ago underwear was. This gift came in the form of a letter, a letter that I had been expecting, because it was a gift I had asked for, had pursued, had sought to be the recipient of, for months. The gift – for it was a gift, albeit one I was entitled to by virtue of my autism – came from the state, and it was a notice that I had qualified for services from the states Department of developmental disabilities, or DDS.

               I got the letter, and I called my mother and told her the good news, because this was something that she had wanted for me. She is getting older, and it has become apparent to both of us that I will never be able to take over the executive functioning tasks which she has long done for me. My mother was happy, because she felt that my future without her would now be more secure. My mother was happy, and so was I, but I still hung up the phone and cried.

               DDS. It’s three innocuous syllables, three letters which accurately describe a part of the government whose explicit mission is to help people like me, those with developmental disabilities. This includes autism, because of course it does, why wouldn’t it? Well, perhaps my reaction would be better understood if people knew that until 2009, the department was not DDS. It was DMR, as in, the Department of Mental Retardation. And it was only in 2014 when a bill was passed allowing autistic people to get services even if their IQ was above 70. Because of this bill, I now receive some funding for help in living my life to the fullest. Yet even as I write these words, a part of me resents the fact that I need this help at all.

               I have studied history, I have learned and relearned things about the early days of this country that we call the United States. I know that when people talk about early Americans being self-made men, what they really mean is that they were white, nondisabled men who actually got quite a bit of help from the government, whether it was free land in the 1800s or free college with the G.I. grant in the later part of the 20th century. I know that while I was born with many privileges, such as being white, upper-middle-class, and cis, I was also born with developmental disabilities that no amount of hard work will ever allow me to overcome. I know that the government, no matter how generous my particular state is, is a miser, and that I would not get services which experts had not determined me to be fully eligible for. This eligibility was based on diagnoses from doctors who had no reason to lie, based on tests that I took as an adult and my extensive medical and educational records.

               Yet still, I cried when I got the news of my eligibility. I cried, and I finally understood what it means when nondisabled parents say that they mourned at the birth of their disabled child, not for this particular child, but for the nondisabled child who would never be. In response to this, disabled people say that this is wrong, that we should not be mourned, that there is nothing missing, and mourning is for the dead while we are living.

And I do not, I did not, deny this. I am a full person and I live a full life. But what is also true is that I grew up thinking that I was nondisabled and that some point, I would, in fact, catch up with my peers and be just like everybody else. That never happened. Instead, my neurodiverse brain grew, and I grew, in neurodiverse ways, and I picked up the mental illnesses and chronic pain that often accompanies the genetic quirk of autism, and the rift between myself and my nondisabled peers grew over the years until it widened, turning from a trickle to a stream to a river to a gulf.

Social Security disability is for lots of people. State health insurance is for lots of people, too. DDS services are not for lots of people. I know many autistic people who would never qualify for DDS. But through some combination of my mother’s advocacy, my advocacy, and being born to a white family fluent in English in addition to quite a lot of testing, interviews and medical records, I did qualify. I did get the services that I need. But just because I need them…doesn’t mean that I want them.

Inside of the deepest part of my brain that is my soul, a war rages. I am fighting against every expectation and every person who has ever told me that if I just bothered to actually try once in a while, I could hold down a real job. I could do what everybody else in my family is doing, namely, succeeding. I am fighting back against this with the knowledge that I have inherent worth and dignity just because I am a human being. I am fighting back with the love and history of my disabled brethren behind me. But the dichotomy is jarring and my grief is jarring and I feel like a wisp, like a wind, like a failure, like a triumph, like a penguin in a room full of birds and a dolphin told it is a mammal and the liminal state of my existence is especially tenuous just now, and it may be for a while yet.

The dolphin said, but how can I be a mammal? I live in the ocean. I don’t have legs. The penguin cried, I do not flap, I do not sing, I have never flown. Look how well I swim, the dolphin explained. Look how well I swim, the penguin protested. There is nothing wrong with being a bird or a mammal but just meet me, just know, just know –

I am lucky. In almost any other state, I would not receive any of the excellent services that I do. In almost any other state, I would not have gotten access to the mental health specialists who have helped me to start to heal from the wounds and shame of my past, to the pain specialists who enable me to rise each day again, to the disabled, liberal, queer community that intersects and entwines me and holds me safe and sits at my table on Thanksgiving. In any other state, I would not have had the opportunity to know as many people with intellectual disabilities as I do, who have taught me that it really isn’t the thought that counts at all – it is the love. That the r-word may be scary but the people aren’t. That it really doesn’t matter if you can’t do anything you want, because what you can do is important enough.

But, the voice inside me says. But what if you tried – what if you listened – what if you admitted that you are a bad person, what if you repented, what if you just did as you were told instead of fixating all the time on pain and your so-called autism? What if – what if but – but

But even dolphins cannot breathe water like fish can, no matter how at ease in the ocean depths they seem.

I am a person who wears underwear, and I am person with a developmental disability, and both of these things are okay. Only just as it took me years to laugh about the underwear incident, it will take time for me to accept needing help from DDS.  And there may be a part of me that never fully accepts that I am a client of theirs, just as there is a part of me that is horrified I am telling ‘the underwear story’ now. The dolphin mourns for their lost identity as a fish, and so do I. Please do not judge me for it. Only continue to do as you have done, and help me to create a world where everyone can live in their own way, whatever that way is, peacefully, together.

 

Note for any literal-minded readers, dolphins and penguins don’t actually mourn for any lost identities, they are metaphors.

Note for people who want to know exactly what services I receive: I am choosing to keep that mostly private at this time, however, I will say that this essay was written on computer equipment that the DDS office funded for me.

Why UU’s Need Autistic People

NB: please see my other post, “what social stories don’t teach you” about a remarkable autistic friend who was a UU almost until she died. It was she that came up with the idea for the elephants, and I was given permission to talk about them here before she passed.

 

Having devoted two previous blog posts to ableism within UUism, I am now writing my third and for-now final post on being an autistic UU, and am going to write about why you – yes you – need autistic people in your congregation and in your faith. Alternatively, if you are an autistic reader, here are some great things that autistic people bring to their communities and congregations, and why you should not give up on having a voice and a role in your church.

I am fully aware that this essay might sound a bit like a justification for disabled people’s continued existence, and I would like to assure my disabled and already-radicalized readers that this is not the case.  I acknowledge that the only real reason that you need autistic people in your congregation is the same reason you need people of color, LGBT people, children, older people, immigrants, and people of differing beliefs – because of the First Principle, the one that acknowledges the worth and dignity of every human being.  Since autistic people are people, therefore, we get included.  End of story.

However, as I continue to work with and be included in my congregation, I am realizing that, despite all the accommodations I need and the help that I get, I offer a lot to my congregation in return.  Some of these things are because of me being me, but some are a direct result of my being autistic and having an autistic brain.  So here’s a list of strengths to think about the next time someone comes up to you and says tiredly, ‘you won’t believe what (autistic congregant) said to the newcomer.’

Instead of commiserating, try empathizing.  A good reply might be, “Yeah, he has a really hard time figuring out what to say to them.  But did you hear about all the research that he did on the historic back staircase?”

You need autistic people in UUism because…..

  1. We point out the elephant in the room, every single time. And when the elephant is stomping on people’s toes, we keep pointing to it and encouraging people to do something about it.

“You always say the things that need to be said, even if they make people uncomfortable,” a church friend said yesterday.  This is true!  A staff member is leaving, and we were having a discussion about how to say goodbye.  I pointed out that some people, including myself, had had numerous conflicts with that particular person and so all of the celebrating we were doing might be difficult for some.  I said that we had not handled the departure of another staff member five years earlier well at all, because we never acknowledged the hurt that he had caused.  I pointed out the repercussions this would have on our congregation for years to come.  This made people uncomfortable but it needed to be said.  When things are left unsaid, they fester in the dark and become sour and gross.  When you bring an issue to light, then you can discuss it and change your behavior for the better.  You can say, that really sucks, and live with the pain openly as a community.

As a matter of fact, if you happened to be at General Assembly, the big convention of all UUs, this year, you might have noticed that there were numerous stuffed elephants all around the convention center.  This is taking the elephant in the room literally, and yes, it was the idea of – you guessed it – an autistic UU.  (I now have 2 white supremacy elephants in my possession, courtesy of that autistic friend, and it will be accompanying me to all social and social justice events from now on.)

  1. We have really, really good memories, and we remember details.

Quick! Name your last four intern ministers and the schools they came from! Name your last three interim ministers! What year was the church built? Where are the fire extinguishers? Why is glitter banned in adult education classes?* Who knows?  The autistic knows!  Facts, figures and names stick in our heads like glue.  Many times this memory is a curse but it can also be a blessing.  We might not be able to take minutes while a meeting is happening but we can often recount verbatim weeks later what someone said at a meeting.  My memory is average for an autistic, which means that compared to a non-autistic’s, it’s very-very-very good.  I seem to have an especially good memory for people who have ever hurt me or any disasters.  I know who was teaching religious education when the kitchen filled with smoke and I know exactly why I detest the Reverend A.  Institutional and congregational memories can be short; autistic memories are long.

  1. We are very enthusiastic.

We are doing renovations to my church soon, and I am absolutely positive that nobody, but nobody, is as excited to see the plans for it as I am.  When we get into a subject, we get deeply, deeply into it – it is a whole-body experience of joy and excitement, like standing in a storm of glittery birds and hearing a full chorus inside your heart.  This is how I feel about the building work we are doing.  I’m so excited at committee meetings that I’m literally flapping away and biting myself because I want to know what will happen next.  It’s better than any play or story to me, because it’s real.  It’s happening.

  1. We get really into a subject.

Autistic people are great researchers.  When we want to know about a subject, we want to find out everything ever written about or said or sung about a subject.  When we do research for a project, our fluency in facts and figures enables us to give miniature lectures on demand to any congregants who might need them.  I can explain exactly why the building work is so important and when we last did it and what we have found and what the timeline is and I will talk to you about this without stopping forever.  I mean, not forever, I think I’d get bored eventually, but I’ve yet to reach the point where I get bored on my own, people always change the subject because they get bored.

  1. We are not afraid to point out hypocrisy, to speak up for others or to criticize people.

A teenager in our congregation is neurodivergent and explained to his parents that he had been lending books to our office manager.  “He said he didn’t have the time,” the teen explained, “but I said he did too if he had the time to look at pictures on the computer, that’s what he does all day, he’s always looking at pictures on the internet.”

  1. ……especially when it comes to social justice.

If your church is a place of polite platitudes, if people ask how others are without really wanting to know, if manners cover up racism, sexism, homophobia, and other unacceptable isms – then you need more autistic people there.  Often times, people are so afraid to break social rules that they let things like racism go unchecked.  When at a recent meeting, someone said something very racist, I exploded.  Without waiting to be acknowledged, I said that what she’d said was awful, horrible, and racist, and she shouldn’t have said that.  After the meeting, several people thanked me for saying that.  Yet, nobody else said anything at the time.  This is so stupid.  If someone says something racist, it should be pointed out.  Yet neuro-typical people are often socialized to be polite to the point where they are physically unable to break out of this role.  It is awful.

  1. We are hard workers, and we show up.

Lastly, you need autistic people because we are very hard workers, and since many of us don’t work full time, we have the time to devote to church matters that many other people do not.  From a very young age we had to work harder and longer than anybody else to get things done.  As a result, many of us, when you accommodate for our executive functioning difficulties, are extraordinarily hard workers and devoted to the cause, whatever the cause may be.  I am well aware that I need more help than most people to do things like follow along in meetings, understand what’s being said, and get my real words out.  But I truly think that I give back to others also, and I love doing it.  It is not a coincidence that the steadiest, most enthusiastic member of our greeting team each Sunday is neuro-divergent.   It is no coincidence that I know where to get the ladder to hang the Christmas wreaths every year, or that I bring cakes and other things for social hour quite frequently.  When autistic people makes promises, we follow through on that promise, and if we don’t, we usually have a really, really good excuse.  (For example, not showing up to a meeting because it was held at X place on Y street, and we went to Y avenue and wandered around lost for three-quarters of an hour before having a meltdown.)

 

I know that it can be hard to have autistic people as a part of your congregation.  However, it is also hard to have children, elderly people, and many other people in your congregation.  I mean, did it ever occur to anyone that a church could run perfectly well if there were no people to mess things up?  Because people mess up.  Autistic people mess up.  We are human beings and we have needs that can be hard to meet.  A month ago I felt the urge to investigate a new chalice we had and accidentally spilled lamp oil everywhere.  Lamp oil is not the easiest thing to clean up, but it could be cleaned up, just as all messes can be.  If UUism is going to be a place for all people who identify or find fulfillment in UU churches, then we must open ourselves up not only to people of differing ages, races, classes, and beliefs but to different abilities and different neurologies as well.

All means all, and all have a lot to offer.

 

 

*that was totally because of how a craft I did, very sorry.

What Social Stories Don’t Teach You

 

Carolina died.

I wrote this essay on autistic contributions to Unitarian Universalism and I sent it to her and I got permission to use her story about elephants and I meant to publish it sometime in July but somehow that never happened and then it was August.

It was a Monday. I had gone swimming, but the weather had turned from humid-sticky-hot to more reasonable temperatures, meaning that the unheated pool was too cold for me, none of my friends were there and I shivered underneath the heavy clouds. So I came home a good hour before I usually did and a friend texted to ask if it was all right to call me and I said sure and she did and her voice was breaking.

Her voice was breaking because she knew what she had to tell me, and what she had to tell me was that Carolina was dead.

Carolina was dead.

The last text I ever sent her was a picture of one of the elephants sitting at the top of the pulpit at my church.  I said that it’d been sitting off to the side but that our minister had seen it and elevated it to the front of the pulpit, to the very top where everyone could see.  She sent a smiley face back.

A week later she was found floating face down in a pool, and we don’t know what happened.  Maybe we never will.

Carolina died.

She was my first autistic UU friend, even though, in the last 2 weeks of her life, she renounced UUism because of its’ inability to be anything but racist and ableist.  She hugged me and I didn’t mind the smoke.  I lectured her about cigarettes and she didn’t mind the lectures.

Carolina died.

Carolina is dead.

My tenses, past, present, future perfect imperfect, they keep getting mixed up and going in circles because it has taken me months to write this essay and my mind is still whirling with the news. I went swimming on the day she died but now the pool is stark and empty, the trees have lost their leaves, and the ground lies frozen beneath the softly drifting snow, yet my heart is still open, my soul has a jagged tear in it, my body feels chiseled and strange. There are days that go by that I am so busy that I don’t think of her once, and then there are days, days like today, when I can’t stop thinking about her and I know that my world will never be the same again.

My therapist says that for neuro- typical people, memories lose their sharpness and feelings fade over time. Autistic memories don’t work like that. I wish, I wish they did.

Carolina died, Bill died, Eva died. 2019 was the year that I learned a social skill that they never teach you in class. There has never been a social story written about how to do this. Maybe it’s seen as a nonessential skill. Maybe it never occurs to the people who write social skills curriculum that this conversation is one that all people will eventually have with another person, because eventually, your world stops growing, growing, growing and it contracts, one person at a time.

This is a social story that I wrote as a Facebook post the day after Carolina died. My internal social stories often help me to process events by removing myself to an outsider perspective and letting my brain take it in more slowly.

I hope that nobody ever has to use it, but I know that eventually, everyone will face a similar situation. When you do, I hope that your grief is bearable, and that you find some sort of comfort in knowing that other autistics mourn just as deeply and painfully as you do.

 

This is how you do it.

You pick up the phone, because this is no time for texting and even though you yourself have said that there is absolutely nothing that can’t be texted, you were socialized enough to know that this is no time for texting, and so you pick up the phone.

You dial a number.

The phone rings. And rings. And rings, because lots of people don’t pick up unfamiliar numbers these days.

In that case you leave a message, or send a text. You say, “this is (your name), please call me back ASAP tonight at X, not a physical emergency,” because it isn’t, nothing burns and you aren’t in hospital and nobody is dying. Not now, anyway.

This is how you do it.

They answer the phone and you say, “are you sitting down,” and usually they aren’t so you wait a moment until they are.

“I have to tell you something,” you say, and you know that they know that this is serious because you, you of all people, you don’t make phone calls, you make emails and texts and phone calls are for emergencies only. “Because you shouldn’t hear this over email or on Facebook.”

The person you are talking to is sitting down and their heart is beating faster and there’s no way to do this but to do it. You say, “Carolina is dead.”

They say, “who?”

And there is silence, and you fill it. “Carolina Krawarik Graham” you say, not sure if you’re pronouncing her last name correctly. “From ARE. From -,”

And your words beam up to the satellite and beam back down and the person suddenly remembers who you’re talking about and they say, “No.”

People will always say no. They will always say no because they don’t want it to be true.

And there is silence, and you fill it. Who told you, who you told, the few details that you know.

And there is silence, and you don’t fill it.

And in the silence is a body lying cold in a morgue and you say something about investigations and can’t remember the word autopsy.

And there is silence, and they fill it – pithy sentences, asking how you are. You are fine. You are fine now because an hour ago you took 2 mg of Valium in order so that you wouldn’t throw up, but you don’t say this. You say, “I’m fine,” because you are, you are, you have a remarkable ability to be functioning in the very worst of times, but you don’t ask how they are because you just told them that their friend was dead and [details omitted pending investigations] and nothing in the entire world will ever be just fine again.

“It will hit me in a few weeks, or months,” you say, and this is true, because autistic memories are long and autistic processing speeds are slow.

Carolina understood this.

Carolina understood this because she was autistic herself and she Got Stuff even when nobody else did.

Carolina was a voice on the phone and a text away and a virtual hug and an ally and a fighter and so many many things all of them wonderful and now –

“I’ll see you when I see you,” you tell the person that you’re talking to. There is more silence, and it is more awkward. There is no social story that ever prepared you for this, no script to memorize, nothing in your brain. Just silence.

“Thank you for telling me,” they say, they always say this. “Thank you for calling. For telling me in person.”

You don’t say “you’re welcome,” because that trite phrase is totally inappropriate. You don’t say you’re welcome when you’ve taken a hammer to someone’s soul. You say instead, “Of course.” You wait through more silence and you say, “Goodnight,” and they say, “Goodnight,” and that’s it, another person told, another body contorted in pain, another face streaming with tears.

This is how you do it.

This is how you tell someone their friend has died.

This is how you shatter a soul.

My stomach feels like a broken glass ball, shards sticking into my heart, my arms, my eyes. Carolina can’t be dead. Carolina is dead. Carolina can’t be dead. Carolina is dead.

The phone calls are over. The mourning begins.

Not Dead Yet

I know that it has been forever since I have updated this blog. I stopped writing it because honestly, I was in just too much pain to type. I was very worried that I would never write again because the pain in my arms was so bad. However this fall numerous things have happened, among them that I got services from a few state agencies. With the help of two of them-one for training, one for funding-I have, as of this week, acquired a new computer, my first laptop, with a program called Dragon speak installed. It is Dragon with which I am writing this. Dragon is a dictating software which enables you to write via speaking into a microphone. I am still getting used to it, and my writing via speech is much, much slower than my writing via typing, because I learned to type when I was 11 and writing has always come much easier to me than speaking has.

However, unlike typing, speaking does not cause me to be in enormous pain. Therefore, as I have done my entire life, I will persevere despite my difficulties. I am hoping to get back into serious writing, including submitting articles for publication to other venues, soon. I know that it will be slower, and it will be harder, but everything in my life that I have ever accomplished I have done with more slowness and more difficulty than other people have. So the method might be new, but my attitude is the same. Forward is the only way to go. Writing, however I do it, gives me joy. As the state agency representative said when they agreed to fund the software, I am going to get my voice back.

And so, if I have any readers left, hello, and I hope-no, I know-I will be back here, to tell you so, so many things, soon.

Ableism on a Sunday Morning

chalice

(image of a very generic black and white flaming chalice, inside two rings, from uua.org)

(this essay was written into my phone during part of a Sunday morning worship service, then finished at home. It is the result of my very high pain levels and thus low tolerance for, well, everything today.  The statements reflected within did not necessarily all happen today, and the ‘you’ does not refer to everyone, but to specific people I will not name.)

I walked into church today and the wide, cream colored walls had been covered in beautiful, large, framed photographs of nature scenes. I stopped short.

“Why photographs?” I asked. (Grammar was not being my friend today.)

“I think they’re pretty,” the woman handing out programs said, her tone implying that I had called them ugly.

She doesn’t understand.

I want you to.

I want you to understand that the glass and color and the fact that the photos are on every wall literally changes the space physically for me, and I don’t know where my body in space is, and it’s harder to walk.

I want you to understand that the dramatic change in the sensory environment feels like something crawling and clawing its way out of my skin. The large, familiar room feels like a stranger and my body and brain cannot reconcile it.

I want you to understand that when you say, “rise as you are willing and able” it feels like hot fire pokers in my heart as I’m reminded that I could once rise willing but am no longer able.

I want you to understand that when you don’t use the microphone it means you have put up a barrier and that you don’t care. Even if honestly, I could hear you without the microphone because of my super-sonic autistic hearing, I want you to understand that accessibility for all is just as important as accessibility for one.

I want you to understand that by the time I’ve arrived at church today I have already done a lot.  I got up, I made and ate breakfast, I got dressed, I did medications and caffeine (weighing one against the other against what I’ll do) and dealt with the casual inconvenience of a local road race blocking my usual HP spot and spoon theory is a thing you should know about https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I want you to know that I had to change seats, as I frequently do, because our scent free policy has never been enforced.

I want you to know that thanks to autistic memory I recall, accurately, every single time you have hurt me, and I will never forget. And I know that as part of our church covenant I’m supposed to forgive but……I’m not sure I ever will.  And part of this is because I know that people have never forgiven me for the mistakes I’ve made.

I want you to know that when, like right now, I’m engrossed in my phone and not the service it is this technology that enables me to stay in the service at all.

I want you to know that your story is cute and clever but unless you specify what exactly the metaphor is I think you just told a tale about sentient objects or animals that made absolutely no sense to me.

I want you to know that I was proud of myself because even though I didn’t make it through the service sitting in the meetinghouse I made it through sitting in the front hall (it’s actually called the narthex for some reason)* and listening to the sermon through the speakers.  I was proud. 

I want you to know that moving my arms and hands is really, really incredibly painful these days and as a result I can’t fidget or stim and that somehow affects my speech and other body parts. I want you to know that just because I can’t find the words to speak fluently today doesn’t mean that this is how it always is for me – it usually isn’t. 

I want you to know that that I didn’t mean to knock that over or break that thing but I had to touch it the way you have to breathe.

I want you to know that I’m in pain. Constant, unending pain. I want you to know that on any given week I’m doing medication changes and seeing specialists and you have no idea how much time this takes out of my life. And unless you also have significant developmental disabilities and autism then you have no idea that the state/federal medical system I’m in is totally different for me than it is for you, just as I know that as a white person born fifteen miles from here my medical system is drastically different than that which a POC or an immigrant deals with. And I am lucky, lucky, lucky – I have better medical care than 99% of people in my situation in the United States, because (no offense other states but this is true okay) I live in the best state.

I want you to know that that I despise you. I despise you deeply and I am filled filled filled with towering volcanic rage that you can’t see how hard it is for me.

I want you to know that I know disabled people aren’t a group you feel the need to welcome, so you can stop pretending that you care.

I want you to know that I’m here anyway.

*okay so I just looked up narthex here https://en.wikipedia.org/wiki/Narthex and I’m utterly amazed because 1, that’s the east end, not the west end of the church 2, UU’s don’t believe in sin, never have, so how can we have penitents and 3, it’s not a porch.  The bell, the organ, and other important parts of the meetinghouse are in the narthex.  We totally shouldn’t be calling it the narthex but my particular UU church was built in the 1830’s by a large university nearby (after they tore down the old meetinghouse and took the land) in something called a neo-gothic style, meaning that they used local wood and now-rusty nails (we know this when we had some is-it-falling-down work/inspections last year, I assume they weren’t rusty when they were put in) to emulate the great cathedrals of Europe, so narthex it is.  Narthex would be a great name for a service dog. And now anyone who knows anything about UU church buildings probably knows where I go.  Please don’t reveal it here, thank you.

Reaction to the UU World Article Purportedly About Neurodiversity, Spring, 2019 Issue

neurodiversity

(image of the neurodiversity symbol, a rainbow infinity sign)

I first heard about what my friend and I have decided to call ‘the catastrophe’ on a Monday night.  I happened to be away that night, but I read the UU World article online and spent a few hours comforting and being outraged.  I noted in the article Kimberly French’s incredibly awful proclamation that disabled people prefer ‘differently abled’ (no, we don’t, we never have, stop trying to make it a thing) but when I opened up my physical issue of the magazine the next day, I was prepared for the hurt within as a bystander – after all, I’m not trans.

                “Are you surprised that UUism is full of transphobia?” a minister asked my congregation shortly after the article came out, citing the statistic that 42% of trans people ‘experience regular trans-related marginalization in UU spaces’. (The statistic is in the the TRUUsT Report, in the Summary on page one, and in the main body on page 7 https://truust.files.wordpress.com/2019/01/trans-uu-experience-survey-report.pdf) I showed my emotions in a typical way, I would have shrugged.  As it was, my face was blank (my face is usually blank) but was I surprised?  No, of course not.  Of course transphobia was rampant in UUism.  After all, I’d been experiencing entrenched ableism for years.  Of course marginalized groups were marginalized.  To me, that’s perfectly normal.

                What with all of the (deserved) attention on the article-purportedly-about-trans-people, I understand if people missed the other disaster of an article, this time on page 10 of the physical issue.  (link at the bottom of this essay) Aside from me, nobody really noticed it.  But I did, because while I might not be trans, what I am – as anyone who knows me will tell you – what I am is autistic, neurodiverse, disabled.  My brain and body are unusual, a zebra in a herd of horses, so the title ‘The spectrum of inclusion: UU communities are learning to value the many forms of neurodiversity’ caught me right away.

                As did….the puzzle piece?  What the heck?  What were watercolor puzzle pieces doing illustrating an article purportedly about neurodiversity?  Didn’t people realize that most autistic people hate it?  Why not use the actual neurodiversity symbol?  “I am a person, not a puzzle,” I frequently tell people when they ask why I hate that darn shape.  (https://learnfromautistics.com/the-problem-with-the-autism-puzzle-piece/) What I don’t say is that the puzzle piece is used by charities that do active harm to autistic people, that autistic-led organizations prefer the rainbow infinity symbol of neurodiversity, and that there are many talented autistic artists out there who could have created a much better illustration than some wishy-washy puzzle pieces.

                The second thing I noticed about the article was the pronoun – he.  He, he, he.  With one exception, every autistic person mentioned or quoted in the article was a male.  This is surprising, since in the actual autistic community, people of all genders and gender representations are presented.  Then again, I shouldn’t have been surprised, as they only quoted two actual autistic men, both from the same family.  (This in comparison to the ten non-autistic people they quoted.) Even without any ability to do math or analyze numbers (as you didn’t learn from the article, some autistic people are really terrible at math and analysis) I can tell you that 2/12 is a very low percentage.

                The more I read, the angrier I got. As in the Catastrophe article, there was so much in this one that was just plain wrong.  Autistic people do *not*, for example, have eidetic memories, and that has never been considered a classic trait of autism.  We do tend to have very good memories, but eidetic ones are rare.  Pursuing AIM certification doesn’t actually mean that a congregation is welcoming to people with disabilities – at one point, my congregation was attempting the program while several disabled people left due to lack of access.  Mostly, though, what I felt was loss: the loss of autistic voices so that the voices of more religious professionals and parents could be used.

                The article on neurodiversity wasn’t a catastrophe.  It was, rather, a mess, a severe thunderstorm instead of a hurricane.  It couldn’t seem to decide if it was talking about neurodiversity or about autism or about disabilities, and so flipped between the topics and confused them.  For example, it cited modifying noise levels as something churches can do to be more inclusive, but didn’t say what is obvious to any disabled person: different people have different needs in regards to hearing things.  For some, modifying noise levels means installing a loop system for hearing aids and making sure everyone uses the microphone.  For others, it means installing sound-dampening panels so the organ isn’t so loud.  For me, it means making sure that all of the microphones and speakers never, ever have feedback, which makes me feel as if my body is being poked through with hot iron sticks and inevitably causes me to visibly startle and sometimes yell out or duck under the pews in the middle of service.  Anyone will agree that children and adults have vastly different needs and the expectations for them should be very different, yet their stories were mingled together in this article as if children and adults with disabilities were a single population. 

                There were parts of the article that were good.  A thunderstorm, after all, can bring needed rain.  The author quoted Steve Silberman, whose book on the history of autism and neurodiversity, Neurotribes, remains the single best book that I’ve ever read on the subject.  The resources listed were good.  They got the language right – we are autistic, not people with autism, thank you. 

                But just as with the Catastrophe feature article (not essay, Chris Walton, article) on page 30 of the magazine, this article should have been written by an autistic Unitarian Universalist – like, hey, me.  Autistic people are, overall, vastly un and underemployed for our education levels, there are many great writers out there, and paying a non-disabled person who probably doesn’t live in poverty to write about a population that almost universally does is just, well, icky. 

Also, did anyone else notice that this article only talked about a certain segment of the autistic population, people who seem able to fit in and accommodate others, people who others want to accommodate.  What about the child who pays no attention in RE and doesn’t seem to be getting anything out of it?  What about the adult who scratches and bleeds through the service?  What about the nonverbal person who runs around, blowing out all the candles on Christmas eve?  What about the person who can make meaningful contributions to congregational discussions on important topics, but makes people uncomfortable by their constant chewing and stimming in meetings? How do we accommodate those people? (Hey, there I am again!)

This article offers no suggestions for the harder parts of being neuroatypical, and please trust me, although I do value autism and neurodiversity greatly, there are really, really, really hard parts to it, too.  People have a very hard time understanding that autism isn’t something that affects you part of the time; it affects 100% of a person 100% of the time, and if you want my insights into healthcare, you have to put up with the fact that I frequently bleed.* You have to accept all of us, all of the time.  I shouldn’t have to leave church during a meltdown, I should be able to get the support I need to get through it so that I can continue participating in a community I love.

                Truly valuing neurodiversity isn’t just about accepting the gifts and the good parts.  It’s about accepting the mistakes and the bad parts, too.  It’s about not assuming that just because someone has a master’s degree, they can tie their shoes, and just because someone can’t speak, they aren’t educated.  I, like many autistic people who speak verbally, can and do go non-verbal in times of stress.  A congregation shouldn’t just be prepared for people to be different – they should be prepared in concrete ways, like having PECS signs, clearly marked emergency exits, and the understanding that when a person is absorbed in their smartphone, they may be communicating with you the best they can, by typing.

                A minister, who has since left, once explained to me (in writing) that I was racist because I didn’t understand his accent, and if I tried harder, and opened my heart more, I could.  I explained that, actually, I have non-verbal learning disabilities, auditory processing problems, autism, etc, which make it really, really hard for me to understand anything but conventional American English because I don’t get the nonverbal cues and inflections which give neurotypical people clues to the meanings of words.  No, the minister said flatly.  I’m racist.  I admit that as a white person, I’m inherently racist, but in this case, I just don’t think I was.  If not understanding accents was because I was racist, then why would I need subtitles on the BBC? 

                This is just one small example of the ableism and discrimination that I have faced as an autistic UU.  I remain committed to my congregation and try to live UU values, but it is really, really hard to do so on days when people assume that my flat affect means I don’t have feelings, or UU World decides to write an article centered not on autistic voices, but on the voices of those affected by autism.  Just as with the Catastrophe article, it should have been done better.  Unlike with that article, however, I honestly don’t think the writer or editor knew any better.  And unlike them, there will be no big conversations.  There will be no apology, no meetings.  It’s my honest opinion that Chris Walton needs to resign over the Catastrophe article, but over the autism article?  Eh.  It’s ableism.  It’s entrenched in UU culture, and nobody is particularly concerned. 

 

(article I’m referring to in this piece can be found here https://www.uuworld.org/articles/valuing-neurodiversity although I’d like to state, in case you didn’t catch it in the essay, that I think it’s awful and should not have been published as it is.)

 

*Yes, I’m working on it.  I’ve been working on it for decades.  Yes, I have tried every medication and supplement out there, yes, I see many doctors and therapists and yes, I’d rather you listen to my insights than get fixated on the blood.

Discrimination Across the Rainbow

 

Ableism in the LGBT community

Please note: Identifying details have been altered here, because I believed, and continue to believe, that ‘Millet’ does good work.  They do important work.  They fought a good fight and I am glad that they won.  Many of my friends had positive experiences volunteering with them.  I am certain that they accommodated other disabilities better than they did mine.  I am certain that, were I legally allowed to contact them, we could probably have worked it all out.  Unfortunately, that didn’t happen.  This happened instead.

If you know me in real life you are welcome to ask me the name of the organization.  Otherwise, I believe that LGBT groups get enough hate in this country, and I truly don’t want to add to it.  I just want to raise awareness.

                I want to tell this story.

 

                I want to tell this story because it is important that disabled people know, and are prepared, for discrimination to happen to them.

                I want to tell this story because the LGBT community should be welcoming to all people.  It should be comfortable to all people. It should be home for all people who identify as LGBT.  And yet, for many disabled or otherwise marginalized people, it isn’t.  Yes, overall, the LGBT community is wonderful, colorful, accepting, awesome – except when it isn’t, and it fails hard, very hard.  LGBT people and communities have shown me radical acceptance, but they have also shown me radical exclusion.  They have been my saviors, and they have also been the destroyers of my dreams.

                I want to tell this story so that people know what ableism is, and how they can avoid it.  I want to tell this story so that people realize their own prejudices, and think a little harder next time they encounter a marginalized person within the LGBT community.

                I want to tell this story so I can stop telling myself that it was, after all, all my fault.

 

                Sometime last winter, I attended a community meeting about an important topic run by a local LGBT nonprofit– let’s call it Millet.  Millet was working on a trans-rights issue that my county would be voting on in the fall.  Having known and loved numerous trans people in my life, I was passionate about making sure that the law didn’t pass. They were looking for volunteers to canvass and to work in their office.  Since I had a fair bit of free time and my touch typing skills from sixth grade have held up, I volunteered to come in once a week and do whatever needed to be done.  The campaign workers were happy to have me, even after I said that my significant developmental disabilities had caused frictions with people in the past.

                My first day there, I sat down with the office manager (maybe? I don’t know.  There were many different titles and I could never figure out who did what exactly.) and explained to her that I was autistic, had non-verbal learning disabilities, and mental health disabilities including PTSD. I told her that I was eager and happy to work, but that I needed clear communication and direction, for people to be kind, and above all, to understand that I would never do anything to offend them. If I did do something inappropriate, they needed to tell me clearly and calmly, because I would never, ever do anything to hurt people on purpose.  The manager, Buffy, assured me that of course they were welcoming of neurodiversity.  Of course they understood autism.  They would be happy to accommodate me.

                The first few weeks went fine.  I noticed quickly that I was an oddity in the office as my work style is always to come in, sit down, and work with a minimal of socializing.  This is not, however, the way that all offices do things. It was not the way that this office did things, instead, these people seemed to spend as much time talking to each other as they did doing actual work.  This puzzled me, but I put it on my never-ending list of ‘ways neuro-typicals are weird’ and continued doing data entry. 

                The office, one of a few spread across my county, was in an older, shabbier city to the northwest of me.  It wasn’t the best of neighborhoods or the best of buildings, to say the least, which was probably why the organization could afford it.  I was scared to go to the bathroom because of the mice that ran across the floor in broad daylight, but I figured that it could have been worse – it could have been rats.

                The mice did, however, bring my attention to problems such as the many piles of paper scattered across the office.  Those piles of paper brought my attention to the fact that there were very few outlets, and most of the computers were connected with a daisy-chain of electrical cords, surge protectors and those multi-prong outlets called ‘spiders’.  It was winter, the heat was on, and I thought about the fires that displace people too easily in my city.

                “Where’s the fire extinguisher?”  I asked.  Buffy didn’t know.  “Where’s the fire exit?”

                Someone gestured to a door in the back wall.  “We think that’s it,” they told me, “but since it goes into another person’s office that we don’t want to disturb, we don’t use it.”

                In other words, there was no fire exit.  They had never had a fire drill.  There were no sprinklers, though they assumed that the alarms worked because the building was owned by a lawyer.

                “I know about fire safety!”  I happily spoke up, in that oblivious, obnoxious way that I do.  “Let’s talk to the people next door!  Let’s have a fire drill!  Let’s clean up the papers!”

                It’s true – I do know about fire safety.  I know about fire safety because a few years before I was born, my parents house burned down due to faulty electrical wiring, and almost took them with it.  I grew up hearing stories of that fire, and being taught from an early age to be aware of exits, to keep my smoke and carbon monoxide alarms up to date, to dash out the door at the slightest whiff of smoke or beep of a detector.  Within a mile of me, a grocery store and a large boarding house burned to the ground by the time I was in the eighth grade.  When I was in college, my mother called 911 because her carbon monoxide detector was going off, and the firefighters told her that if she hadn’t, she would have definitely died in her sleep that night as the deadly gas filled her home due to a furnace problem.

                So yes – if I’m a little bit obsessive about fire safety, it is with both good reason and with the eagerness and moral righteousness of autism, which I understand can easily translate to being annoying.  However, I knew that I wasn’t being too annoying, because if I had been, Millet would have told me.  After all, they’d agreed when we talked about my disabilities……right?  They understood that I had a hard time letting go of a subject, especially one that was about safety, because their whole organization was devoted to the safety of LGBT people……right?

                Wrong. 

                A few weeks of bad health led me to not go volunteering, but in those few weeks, I continued to email Buffy and talk about fire safety.  I consulted with a minister, some friends, and a fire safety expert that I knew about what the office should do.  My eye for detail left nothing out, and they were all in agreement that something must be done. In total, I sent 3 emails.  In the last one, I mentioned that the fire department could probably help them to make their office safer, and if it was too much for them to do so, I could, because I was all! About! Fire safety!

                It was then that I got the email, which was short and to the point.  I was harassing them, I was being inappropriate and rude, and I was not welcome in any way at the organization again.  If I ever communicated with them further, it would go to their lawyer.

                Lawyers?

                Lawyers!

                Oh my god.

                I knew about lawyers.  My favorite uncle was a big-city, big-crimes lawyer for decades.  He put away serial killers, mafia dons, rapists.  He put them in jail for life.  (He also brought photos of headless bodies in alleyways to career day at my high school once and was a big hit.)  I also thought that I knew what harassment was – it was when you annoyed people so much that they put you in jail.  It was basically like being a sex offender.  Or something.

                I didn’t want to get arrested.

                I didn’t want to go to jail.

                I went to the hospital instead.  My friend Suzi came, and drove me through the darkening night to the busy city ER where I’ve, unfortunately, spent way too many hours.

                “Why are you here?”  the receptionist asked.

                “I’m going to be arrested,” I tried to explain, but I was crying too hard.

                “Take a seat,” she replied laconically.  I’m fairly certain that an earthquake wouldn’t shake the receptionist at Saint Anthony’s.

It was a weeknight.  The ER waiting room was crowded.  People were moaning, groaning, grimacing.  Ambulances unloaded in the bay.  In a corner of the room, my friend Suzi and I sat, huddled together.  I was sobbing, shaking  and dry heaving from the worst panic attack I’d had in months.  I kept an eye on the security guard in the corner, wondering when they would come and arrest me.

Suzi read the emails Millet had sent me.  She attempted to explain that I was not, in fact, going to be arrested.  I attempted to explain that yes, I would be, because only bad people broke laws, only bad people did harassment, only bad people were involved with lawyers.

It is, if you’ve ever noticed, very hard to think rationally in the middle of a panic attack.

Thoughts swirled around my head, faster and faster.  I felt dizzy.  If I had broken a law, I would go to jail.  If I went to jail I wouldn’t be able to eat anything because my sensory processing disorder is so bad.  I would lose my apartment.  I would lose my friends.  LGBT people were a minority, so they would not make idle threats.  Right? Right? Right?  I was going to jail.  I was going to jail.  What was the point of even living if I was going to jail?  I was in a hospital.  If I killed myself in the right way, then the hospital could take my organs and use them to save the lives of people who deserved to live more than I did, people who didn’t…..harass……others.  People who didn’t go to jail.

Four hours, one shift change, numerous nurses and doctors and one hefty dose of sedatives later, I was able to leave the hospital.  Someone in a uniform had read the email Millet sent me and assured me that no, I was not going to jail.  In order to go to jail, you have to actually hurt someone or break a law.  I had broken no law.  The sure, heavy voice in the uniform meant a lot to me.  I asked them at least a dozen times if they were certain I would not be arrested, because Suzi said I wouldn’t but Suzi was a civilian and what did she know? Uniform Lady – probably a charge nurse, in retrospect – assured me over and over that I wouldn’t be.

Naia, my therapist, read the email too, a day or two later, when I had slept off the sedatives and sat in her office, crying yet again.

“You annoyed them,” she explained.  “When people want others to stop being annoying, they threaten legal action, because it is an easy and fast way to get people to stop bothering them.  They are not going to arrest you.”

Naia’s words made sense, as did her reminder that there were many types of lawyers, and just because my uncle had been the type to deal with murderers who cut their victims heads off, it did not mean that every, or even most, lawyers did.  I had done nothing remotely like a murderer or a sex offender.  I had…..annoyed some people.  And they had reacted badly. 

“But why didn’t they ask me first?”  I questioned Naia.  “They said that they understood my disabilities.  I prepared them for misunderstandings.  They promised that they would come to me first!”

Sometimes I think that it must really suck to be a therapist because you have to do things like explain, over and over, that people lie.  They say things that they think you want to hear, but they don’t really mean it.  They choose the easiest path, whatever it is.  They don’t have experience but they say that they do.  They say that they welcome everybody but they don’t really mean it.

“So they were ableist,”  I concluded.  Naia agreed that yes, they were really very ableist indeed.  If they had bothered to speak to me as an equal, to assume that I truly had their best intentions at heart, they would never have told me I was harassing them or threatened me with a lawyer. Suzi agreed.  So did many of my other friends.  Knowing that they were being ableist, however, did not do much to calm my utter certainty that I was, in fact, the one who had messed up.

A few weeks later, Suzi and I visited my city’s police station so that I could learn more about breaking laws and become less terrified that I would be arrested at any moment for talking to or emailing people.  The police officer was the first female detective in my city; she was older, kinder, and overall more patient than I’d ever imagined a police officer could be.  She listened to the story.  She, too, assured me that I could not be arrested.  Although I technically had met the definition of ‘harassment’, which is 3 or more unwanted communication, since I had not communicated with Millet since, I was fine.  And even if they had filed a complaint, the worst that could happen was that I would be asked to not contact them in the future, which I was already doing.  There would be no arrests, no lawyers, no trials, no jails.

“You don’t break laws, after all,” she explained.

This actually confused the heck out of me because I know of an awful lot of cases where not breaking the law didn’t mean anything and people got arrested and shot by the police for much more minor things, but I had the good sense for once in my life to not bring up Black Lives Matter or anything else controversial like that.  I assured her that, as an autistic who follows laws, I don’t even speed.  The fact that I’m a white woman probably has much more to do with the fact that I’m not in danger from the police than the fact that I don’t break the laws, but the officer’s words comforted me nonetheless.

I got myself off the mailing list.  I did not donate to the campaign.  I watched as my friends supported Millet, volunteered with them.  I also stopped going to all LGBT events. I drew in on myself.  I only socialized with people that I knew very well, and who knew me.  I was scared.  If Millet had treated me so badly, then anyone could.  I did not go to Pride, because I feared seeing them.  At a parade, when they came by, I closed my eyes and turned my back, wondering if they would see me, and hate me as much as I hated myself. 

As I drove home from church one summer Sunday, I saw Millet canvassing on a street corner.  Instinctually, I started to duck so that they wouldn’t see me, but I was driving so I couldn’t do that.  I stopped at a red light, my heart hammering in my chest, terrified of the innocent, happy, young people out proselytizing for a cause that meant so much to them.  I wondered if driving past them meant that I could be arrested.

Logically, I know that Buffy and the volunteers at Millet have, if not forgotten the incident, then long since put it past.  Non autistic people lack autistic memory, and so the way that they remember events is probably different from how I remember them. But the thing is is that emotionally, I am just as raw and upset as I ever was. Spring and summer have passed and there are pumpkins on doorsteps.  Carving them with friends, two people made jack o lanterns expressing support for the ballot question.  I had fun eating candy and carving my own pumpkin, but those pumpkins scared me.  They were reminders to me that the LGBT community does not see me as one of their own.  I am other.  I am bad, wrong, an annoyance, a harasser.  People there do not like me.  They do not want me there.

I want to tell this story because despite it all, some small part of me does want to be there, but…..

I won’t be.

Not now…..

Maybe not ever.

Because much to my sadness and despair, it turns out that ableism is a rainbow as much as anything else.

October Is Disability Employment Awareness Month

blank brown cafe caffeine

Photo by Pixabay on Pexels.com

 (image of a wood surface with a cup of coffee, notepad and pen, and laptop computer on it.)

It’s an ever-awkward question that comes up at parties, church, community events, game nights, the library.  It’s a blank line on a doctor’s form, an awkward moment in a conversation, a sharp stab to my gut and to my soul.

                It’s a simple query, is what it is.  I’m obviously an independent adult, so I should obviously have a quick answer to it.  “So what do you do?” people ask.  “Occupation______________” reads the form.  It is a drop-down menu on a computer form with spots for ‘homemaker’ ‘retired’ ‘student’ ‘employed part time’ ‘employed full time’.  It is me, never fitting in, never knowing exactly what to say.  People want to know how you fill your time.  They want to know what it is, exactly, that you do.

                And I never know what to say here, because in my mind, I do…..nothing.

                My occupation?  Well, the closest that I can get to an answer is that I’m a professional disabled person.  And though there may be nothing inherently wrong with me or with what I do with my time, I am unable to escape my deep feelings of shame about it.

                The basic fact is that I do not look like what somebody expects a disabled person to look like.  I walk normally, albeit more slowly, with a bit of a gait problem.  I speak ‘normally’, although I can sometimes be rude and at other times lack speech.  I don’t use a handicapped placard or a service dog or mobility aids.  I’m not hard of hearing or blind or anything like that.  Yet I’m disabled just the same.  My primary disability is an autism spectrum disorder and numerous mental health and learning disabilities.  To this I have added in recent years chronic pain and back problems.  What my disabilities mean to me personally is a long and rambling journey that I’m not inclined to take you on at this moment.  What they mean for me practically is that I receive state and federal benefits from social security and that I survive on that and the very-occasional consulting or writing gig.

                “What do you do all day?”  a student asked me this past spring.  She was interviewing me for a class about developmental disabilities at a nearby college.  I told her.  “Oh, so you basically do what everyone else does on the weekends and in their spare time!” she concluded. 

                I winced, and I felt lucky, then, that as an autistic person my emotions generally do not show on my face, for at that moment, I felt utterly devastated.  Somehow, I got through the rest of the interview and showed her the door before the tears came.  In one sentence, this kid – for she was a kid to me – managed to strike at the core of all my insecurities.  Because if it takes me a whole day to do what everyone else gets done on weekends and in their spare time, I must not be very efficient or valuable.  I must be practically useless – or at least, that’s how I felt.

                What do I do all day?  In all honesty, my routine is rather boring. I wake up later than most people, and it takes me an hour or two to get going because I need to wait for the combined effects of caffeine and painkillers to kick in before I’m ready to do anything.  I have 2-7 medical appointments a week – physical therapy, acupuncture, psychiatry.  I attempt to exercise a few times a week and to socialize.  I go to library events, serve on a church committee and my city’s disability commission.  I am the backup childcare for a friend. I bake for myself and for others – I’m the designated bringer-of-cakes to social gatherings. I investigate new doctors, new treatments, for my pain.  I spend an awful lot of time on hold to my insurance company or other places.  I write blog posts and letters and annoy facilities managers about access at hospitals and museums. And I rest, because all of that stuff is utterly exhausting to me.

                I know, in theory, that what I do has value.  I know, in theory, that how much money I make is not actually connected to my own worth as a person.  My religion’s first principle is that there is an inherent worth and dignity in all, and there’s no qualifier for that all.  I am all.  I am included.  I shouldn’t be ashamed…..and yet…….

                “What do you do?”

                I walk to a nearby park and take pictures at the end of the day.  I see people walking home from the bus and the subway, and I notice, especially, the women my age.  They look so amazingly put together, in dresses and boots and scarves just so, with shoulder bags and lunchboxes and Bluetooth headsets clipped to one ear.  I don’t know what they do, but I know that most of them probably spend the day in a building doing……….something……..that earns them money, that pays for their health insurance, that builds up society and enables people like me to simply live.

                If my soul were a color at that moment, it would be the dark-green, shiny-jade color of poison-ivy envy.  Like poison ivy, the jealousy I feel burns my soul and makes me want to leave my skin.  It isn’t right, it isn’t good what I feel.  I know that.  But I feel it just the same. 

                People always have this idea of what poor looks like.  “Looking like a homeless person” is my mother’s way of saying, (despite years of my protesting this awful phrase), that someone’s clothes are ill fitting, that they are dirty, unkempt, not put together.  It has never occurred to my mother that a homeless person can hold down a fulltime job yet sleep in their car, or that not all of the people standing on the roadside holding signs are necessarily unhoused. Looking poor, in the WASP world my mother comes from, means looking a certain way – neat, clean, unobtrusive.  Despite the fact that 95% of what I wear is from thrift shops, I am careful to groom and present myself in public so that I don’t ‘look poor’ and thus, get more respect from those who run things. 

From what I’ve read, Native American tribes, more often than not, valued disabled people as white people did not.  Unfortunately, the white people who came and colonized this land I now call home often saw disability as a curse from their god, and valued productivity over anything else.  They were, as every generation has before them, attempting to survive in a world that usually required quite a lot of hard work to do so, and therefore, hard workers were valued.  I might work hard at my life, but I don’t work hard at an actual job for a living, and so I get judged through a Puritanical lens that most white people don’t even know they are seeing through.

For most of my life, I truly thought that if I just worked harder, just changed my attitude, just smiled more, then my big dream of an office job in my field would come true.  My learning disabilities and my lack of phone skills wouldn’t matter.  I would have business cards with an organization’s logo on them just like my siblings do.  I would have a name plate with my name, be listed in the company directory, have my smiling face on an ID card that I’d wear on a lanyard around my neck.  I would have an office where I could put up a few photos and tchotkes that are important to me.

I know, intellectually, that these physical representations of productivity don’t actually mean anything.  I know that there are plenty of people who will never get any of those things and that they are just as valuable as I am.  But I also know that some part of me will never stop longing for them. 

I’ve heard many people say how much they despise their work.  I’ve heard many say how they wish they could just quit, but they can’t, because of the benefits and the salary, because of their need to maintain their current lifestyle.  I wonder if any of those people know how much I would absolutely (but not literally) kill for a job like theirs.  I wonder if any of them ever pause in the middle of a long, boring task and think ‘damn, I’m lucky.  I get to have lunch in a cafeteria today’ or ‘I have my own mug in this office’.

The world is drowning in sorrow and grief and problems.  All around me, people are doing what they can, how they can, trying to survive the fast-rising waters.  If I weren’t in so much pain, I could probably work an office job for 20 or even 30 hours a week, but if I ever did that – if I ever earn more than $1,100 a month – my social security will be cut off for life, because I will have proven that I am able to work, and thus, not really disabled.  No matter how many liberal politicians we elect, this is unlikely to change, because a fundamental belief of the United States is that if you don’t work, then you don’t deserve to live about the poverty level. Which means that I’m stuck at this level for life.  I won’t pass go, I won’t collect anything but the bare-bones minimum to live on.  It’s like the ‘jail’ card in monopoly except that I have no chance of rolling doubles or getting a card to go free.  I’m a professional disabled person, and this is the best I can do.

Maybe, though…..just maybe….one day….they’ll add another option to those drop-down menus.  ‘Constrained by my body, neurology and society into a life I don’t really want’ isn’t a convenient box to check, but it is my life, and it is the life of millions of Americans.  It’s about damn time that this was respected as much as any other occupation. 

Neuropsych Testing: a government-ordered test guaranteed to lower your self esteem

 

So not many people know this, but to the United States government, there always remains the distinct possibility that your disability, the one you were born with, could some day change and poof! You’re not disabled anymore.  Because of this belief, when you apply for certain services, it wants to know how recently you were fully evaluated and tested for your disability, and if it has been more than  a certain number of years, they would like you to prove that you’re disabled.

Recently, my state wanted to know whether my primary disability was autism or mental health disabilities.  To me, this is like asking if oobleck is a liquid or a solid (it’s both!) but since I do need services, I dutifully trekked into the Big City and endured about six hours of neurological testing. To say it was unpleasant is an understatement.  There is nothing better to make an adult feel like a toddler than to undergo tests designed to root out your weaknesses and slap you with a functioning label.

The tests start with your initial appointment.  The goal of this appointment is to get an in-depth medical history.  In-depth, unfortunately, does not necessarily mean accurate.  As I would discover later, the interviewer got several things wrong on my medical history.  Some of these were significant things, like the reason I qualified for social security disability.

“So you qualified because of your back injury?”  the doctor – let’s call him Dr. Z – asked.

“No.  Because of my autism,” I distinctly remember telling him.

A month later when I sit down to look at my medical history, it says that I got it due to my autism and back problems.

Medical histories are, overall, a very weird thing, because you are expected to bare your soul and most private secrets to somebody you have just met.  The doctors want to know, among other things, what your birth was like (“I have no idea!”  I said to Anna, later.  “It’s not like I was there!” She looked at me oddly.  “Yes, you were,” she pointed out.  Oh.  Yes, I guess I was.  But it’s not like I remember it!)  They want to know about your family, what they do, their level of education, illnesses, medical and mental.  Your childhood, any significant head injuries, hospitalizations, abuse.  They want to know every medication you’ve ever been on.  (How about I just copy this entire psychopharmocology textbook down and we will call it a day.)

“How often do you socialize?”  Dr. Z asks.

“Well, does church count?”

“I don’t know, does it?”

“How many friends do you have?”

“How do you define friends?”

“However you do.”

Almost all of the questions are open ended, which is the sort of question that I’m the worst at.  Looking over their report later, I see that I left things out.  I assumed that by explaining I see my niblings that they would understand I also see my siblings, who are the parents of the niblings.  They wrote down that I had no contact with my siblings.  Unfortunately, I think that such misunderstandings are basically impossible to avoid. When you have a neurotypical person interviewing an autistic person, things will get left out.  Things will get overlooked.  Autistic people often don’t offer any more information than precisely what was asked for.  When others want us to elaborate our answers, we freeze, and the words don’t come.  When I am writing, my brain works better, smoother, than when I am speaking.  This is a simple fact.  This fact is not at all reflected in any of the testing that I did.

I was being interviewed by two strange men – Dr. Z and his graduate assistant, who sat, awkwardly typing, in a corner of the small room the entire time and didn’t participate in the conversation – I think he was just there as a scribe.  They asked me about my dating life.  I blanched.  I read both of these men as straight and knew both of them not at all.

“I – I can’t talk about that.  Not in front of you.”

“Okay, well, why did you write down ‘queer’ as your sexual orientation?  How is that different from bisexual?”  Dr. Z asked.

I am genuinely confused.  It’s 2018, and we are in one of the most liberal cities in the country, and he doesn’t know the difference?  I try to explain, but I’m not sure if he gets it.  I do know that I’m utterly humiliated when the word ‘menstruation’ is written down on the report regarding some of my medical issues – I had couched it in the polite euphemism of ‘that time of the month’.  I was raised to believe that men had absolutely nothing to do with that sort of thing, and would be perfectly happy pretending that 50% of the world didn’t know that you-know-whats existed.

Two weeks later.  I get up, bright and early, and am shown into yet another tiny, windowless room with fluorescent lights that flicker and hum.  This time it’s a different doctor as Dr. Z has gone on vacation.  A different graduate student/doctoral fellow.  The doctoral fellow will be doing the actual testing.  I have previously explained that I have taken many of these tests numerous times before, and I have also studied them from an academic standpoint.  For this reason, some of the tests that I will be given are somewhat obscure.  Well, let’s go then.  Time to start.

One of the things I have always prided myself on is my memory.  I have a good memory.  I can remember being six months old!  I don’t know any neurotypical people who can do that.  But these tests of memory aren’t like that.  They aren’t tied to emotional events.  They are strings of numbers that I repeat back.  They are lots of words I have to remember.

In the hallway, a pager goes off.  I startle, look towards the door, wait for it to stop.

“Please remember that this test is timed,”  Fellow says.

“Yes, but there’s that loud noise!”  I exclaim.

“You are invalidating the tests if you interrupt them,”  he says in a way that makes me think he is only pretending to be patient.

“You honestly expect autistic people to ignore that noise?”  I ask.

Yes, apparently, he does.  This incident was written on the report as, “She startled with an audible gasp and postural rigidity when a pager beeped in the hallway on three occasions.”  Which is some really weird wording for ‘she was startled because she’s autistic and startles easily’, but the entire report is written in really Fancy Medical Language.  I reported, denied, stated, complained – I never just said anything.  And for the record I don’t think I complained about anything, other than the stupid beepers going off, (It’s 2018, why are you using pagers?) and one particular test.

More words, more numbers, some simple math that I know I mess up.  I remember that a chisel is a tool.  I circle all the X’s on a page of other letters.  I play several weird dot-to-dot exercises.  Then it comes – the worst part.  The stupid-little-faces part.

In this test, you are presented with a grid of about twenty or thirty squares.  About half the grid is filled in with small photographs of faces, of all ages and ethnicities.  You look at the grid, then it is taken away and you are given a lot of little cards with faces on them and a blank grid.  Your job is to not only recognize the faces that were on the original grid, but to put them in their original spot.  This proves to be basically impossible for me, but I still have to do it three or four times.

Another test with faces.  Match the face to the emotion.  Once again, I have absolutely no idea.  I explain to the tester that I don’t need to do this because in real life I would just ask the person how they are feeling.  I would explain that I’m autistic and I have trouble telling if they’re mad or not so could they tell me, please?  This does not get me out of this test, or the next one, where I hear a voice and have to match the emotion in the voice to one of four faces.  The really tricky part of this test is that the race and gender of the speaker’s voice does not necessarily match the race and gender of the pictures on the cards.  I am supposed to do it by tone of voice alone.  Then I am supposed to guess what they are feeling.  I say guess because, well, it really is just a game of guessing to me.  When in doubt – which is the majority of the time – I pick angry. In my experience it is always better to assume that people are angry.

Okay, here’s an easy test.  Name that object.  There’s a flipbook with a drawing on each page, and your job is to name the thing in the picture.  Some of them are weird.  Harmonica, accordion – this seems to be a little biased, I mean, would I know what an accordion was if I hadn’t watched an enormous amount of television as a child?  Probably not.  Chair, tree – what is that called?  I know what it is, my mom has one to hold up the roses which never bloom – trellis.  That’s a trellis.  That seems incredibly culturally-bound.  Would someone raised in an apartment building know what a trellis was?  Probably not.  Wait, what’s this picture?  It can’t be.  It is.  It’s a noose.

A noose.  As in, a picture of a loop of rope hanging from the top of the page, a traditional hangman’s noose.  I am outraged.  I am shocked.  Despite the fact that the report said I had a ‘flat, constricted affect throughout the interview process’ I remember my body and brain exploding at this injustice.  Did they have any idea of how incredibly insensitive this picture was?  How would seeing that picture feel to a POC?  Did the Black Lives Matter movement mean nothing to them?  I didn’t care that the test was from the 1950’s.  It was totally out of date, it was inconceivable to me that they didn’t see the racism in that small drawing.  A honest-to-god effing noose.

The tester promised to bring it up at some meeting or another.  I have absolutely no doubt that he never did.  When I got my results his supervisor had never heard of my complaints and dismissed them.  After all, I’m not a psychologist or a neurologist.  Who am I to question the quality of a test designed to tell them how good I am at naming objects?  At one point in the report it said that my thought content was ‘generally appropriate to the topics discussed.’  I’m pretty sure that the parts where I was inappropriate were when I talked about social justice issues like racism, classism, and ableism and the myriad of problems that the tests would cause for people who were not, as I was, raised in an upper-middle-class, white family.  A noose!  I still can’t get over it.  2018.  A noose on a neurological test, a test which is presumably being taken by people who are likely a little bit more prone to suicidal ideation to begin with.

We went on – I requested and was granted a break.  There were some little plastic squares with red and white triangles on them.  I had to arrange the squares so that they matched the picture, like tangrams, except at the end you don’t get the satisfaction of seeing a bird or a house, you just get the knowledge that you scored badly on a test that toddlers could do.  On the fifth or sixth one I couldn’t make the pictures match no matter how much I turned the squares and triangles and the test ended.

This next test is a weird one.  It involves a red bead, a blue bead and a green bead, all on sticks.  The goal of this test is to make the pattern of beads-on-sticks match the one that the examiner made, using the fewest number of moves.  I’ve never seen this test.  It’s weird.  It definitely feels like a baby toy.  (It’s apparently called the Tower of London.  The inventors obviously don’t think anyone taking the test know what happened in the real Tower of London.)  I was average or below average on this ‘test of planning’.  Planning what?  I have no idea.

I looked at a picture and told a story – the story would have been much longer had I been allowed to type it.  My story was apparently ‘overly descriptive’ – I wrote ‘several complex sentences regarding the gender roles that were assumed by the depicted figures’.  Ha.  This was definitely me being snarky on purpose and the tester missing it entirely.  I love poking and prodding at stereotypes and gender roles and challenging people’s expectations.  When I was told to repeat back a story the tester read to me I did so with social commentary because, well, of course I did.  That’s how my memory works.  Everything is tied to emotion and my own interpretation of things.  I don’t remember that Mrs. B lived in this neighborhood because I was told; I remember because this the story said she was a single mother who worked as a waitress and I thought that neighborhood was very pricey for a single mother to live in on a waitress’s salary and thus the whole story was unrealistic.  (I am fairly certain that the tester did not appreciate my commentary.)

There were a few more tests, including naming every word you can think of beginning with the letter ‘F’, which of course meant that my brain went ‘Fuck!’ and then ‘I can’t say fuck! What are other words that begin with F?  I can’t say fuck in front of the tester!’  I also named animals, which for me consisted mostly of dog breeds, and I clicked a button on a computer every time the letter X came up.  I don’t see the point of that test at all and I was utterly exhausted by this point.  I went home and collapsed.

Two weeks later, I faced Fellow and his supervisor, Dr. A, in a small office.  I asked my cousin, who works in the same medical facility, to come along as support, because I knew that I would challenge some of their findings and I also knew that I couldn’t do that without someone backing me up.  It…..did not go well.  To say the least.

“It’s like they didn’t even bother to get to know you at all,” my therapist said a few weeks later, looking at the testing.

“Nope,” I agreed. “They didn’t.”

Dr. A suggested that I undergo speech therapy and social skills therapy.  I said no, I was in that therapy for 20 years and I had accepted the fact that my social skills were not going to improve any longer.  She suggested a parent-led organization which I have had bad experiences with in the past.  She suggested…….not much else.

Overall, I feel like the entire testing process was a total waste of everyone’s time, energy, and money, except mine, because I didn’t pay for the testing.  The state wanted it, the state paid for it, the state got it.  I officially have Autism Spectrum Disorder as defined in the DSM 5.

No surprise there.  What was surprising was how after all these years, neuropsych tests still make me feel incredibly stupid.